Wishing sc-70 and low aldolase were alternative explanations

[Sppspp10]

My neuro says slightly low aldolase and high sc-70 levels don’t negate the ALS diagnosis. Curious what others think.
I have tons of classic ALS symptoms. Hand atrophy, shoulder weakness, thigh weakness, back/ab weakness. Twitching all over limbs/trunk. Emg with fibrillation and positive sharp waves. strength wise, some days I nearly fail at a movement (like raising arms to tie my hair) and other days I can do it altho with difficulty. Pincer grip also weaker and stronger depending on the day. Was really hoping the lab results justified a second opinion but my clinica symptoms are so ALS. Feel pathetic grasping but when my 4yo announces proudly that she woke up with a dry diaper, I can’t help but grasp.

 

[Marieb425]

I don’t know enough about the lab results to answer that question, but we did seek a second opinion. We started with the neurologist who did the EMG and gave the ALS diagnosis, but he also referred us to the neuromuscular specialist at Swedish ALS clinic. He confirmed the ALS diagnosis and then we went for another opinion at UW. Not sure if it was too much but I guess they all said the same thing. I believe my husband and I both hoped it was something else for a while (I probably accepted it before he did). I’m not sure if this is helpful or not - I saw on your profile you’re in WA too and so is Laurie (Lgelb) and she’s so helpful. Of course, I hope it is something else. Best, Marie

 

[KimT]

I got three opinions, then a year later got a 4th. I was progressing super slow and also had a lot of pain but now I know it was ALS and a co-morbidity (Ehlers-Danlos). I would always recommend a second opinion at a teaching hospital or center of excellence. Google ALS clinics in state of Washington and look for www dot youralsguide dot com

 

[lgelb]

A second opinion doesn't need to be justified.

Not familiar with SC-70, but some subtypes of low aldolase are associated with inflammatory myopathies and muscular dystrophy, so a second opinion is just as advised as always. Though myopathy has a different appearance from ALS on the EMG, another set of eyes won't hurt. Like Marie, I would suggest UW for a second opinion as well if that's not where you were diagnosed.

 

[Marieb425]

Yes, we started at Swedish (more convenient to where we live) but ended up switching to UW for care after a year +. I don’t want to get into the reasons why on this but people can always message me to ask about our experience.